Dementia denial: The secretive obstacle to intervention

“Oh, silly me; I’d lose my own head if it weren’t attached!”

“Of course I remember that—I was just joking.”

“Yes, I feel great, thanks.”

Anyone who has a family member or friend diagnosed with early-stage dementia or Alzheimer’s has heard these phrases, and many similar ones. One of the trickiest aspects of early-stage cognition impairment isn’t necessarily the disease itself—it’s the denial.

For caregivers, patient-centric denial becomes a frustrating obstacle to productive memory-care regimens and possible treatment with medications that could earn precious time, if administered early on. For families and friends, it can be absolutely devastating.

Denial is, first and foremost, a coping mechanism—rooted deep in the human psyche. It taps into our most primal survival instincts, attempting to reassure our own feelings of normalcy and belonging in the communitywide collective we call life.

Many people who live with early-stage dementia can still drive to the grocery store, have logical conversations, recite multiple phone numbers and addresses, and function rather well in daily life. To them, things seem pretty much OK, so they find it hard to see what all the fuss is about.

They naturally wonder why others are harping on them, as if they aren’t capable of remembering a simple task! They misunderstand their family’s reactions, they doubt their own diagnoses and they reject their physician’s proposed care plans. (It’s not surprising that, during the earliest phases of a diagnosis, many patients may insist on a change of physician at least once, despite all test results.)

Then, at some point, the cognitive cracks begin to show—to them. They realize they’ve somehow forgotten a crucial responsibility, overnight. They realize that they’ve eaten breakfast twice today, failing to register the first time. Tomorrow, they might realize they can recall minute details from 1983, but can’t seem to remember the current route to their hometown library. Then, a close family member suddenly reacts very strangely to something they’ve said, leaving them with the eerie, foreboding feeling that something is obviously amiss, but they’re not sure what it is.

Then the real, bone-level fear sets in.

It’s well documented that many people with early-stage dementia will do almost anything to hide their symptoms for as long as possible. They might disguise their miscues under light-hearted comedy, or deliberate projections of “silly me” absentmindedness, or outright lies. Anything to retain a grasp on what it felt like to be normal, just for a bit longer. Anything to staunch the unfortunately traditional paranoia-thought: Don’t let them know, or they’ll put me away.

But secrets like this are extremely stressful to keep. So, their own private frustrations often cascade through families, friends and all levels of relationships—partly because cognition impairment can dramatically change the way people interpret the reactions of others, and partly because stress is a sharable, reverberating and deep-seated thing.

“Denial masks emotions of grief, loss, fear and uncertainty,” writes Angela Lunde, an education outreach coordinator at the Mayo Clinic. “Anger will only make them dig their heels in deeper. And when we resist, blame or reject, we stay trapped in our own anger.”  

Yet, long-term care providers should note that denial often can be an overused “label” in caregiving, resulting in inadequate listening to the unique life circumstances patients offer, notes a cross-literature review on patients’ acceptance of chronic disease diagnoses, published by the National Library of Medicine.

More than 5.4 million Americans have Alzheimer’s disease, the most common form of dementia, according to the Alzheimer’s Association. Although denial is a normal stage amid the many other stages of the dementia-diagnosis acceptance process, it presents many challenges for the patient and for their families and friends. Memory-care and dementia treatment programs must strive to interact in a 3-D way to address the “secret fears” of those diagnosed—and to provide detailed education to family members on how to understand dementia and how to interact with their recently diagnosed loved ones—or the well intentioned job may be only half-done.

September is World Alzheimer’s Month. To learn more about Alzheimer’s and other forms of dementia, please view the list of resources provided by the National Institute of Neurological Disorders and Stroke (ninds.nih.gov).

Pamela Tabar

Pamela Tabar was editor-in-chief of I Advance Senior Care from 2013-2018. She has worked as a writer and editor for healthcare business media since 1998, including as News Editor of Healthcare Informatics. She has a master’s degree in journalism from Kent State University and a master’s degree in English from the University of York, England.